Our journey in the Autism Spectrum

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Role Playing

Over the summer Henry expressed interest in making some friends. I tried to start working with him on some things he could do to help him in that area. He said it felt like too much work and it just wasn’t worth it. Sure. I get it. We let it go. But as middle school got underway, we felt we needed to address this topic again with him. Our hope was that if he had just one friend, someone he could connect with, it would help him deal with any teasing or bullying. Then we learned that Easter Seals Midwest has a program called PEERS. It’s a curriculum based on the book by Elizabeth A. Laugeson called, The Science of Making Friends: Helping Socially Challenged Teens and Young Adults. They had a session that started in January. Henry was ready to try the program and was quite excited about the class. They have homework every week such as making or receiving a phone call or having a “hangout” with someone. And he has really embraced it! He’s doing great!  Until this latest chapter.

They’ve been talking about how to deal with teasing and working on ignoring or pretending they don’t care. Henry just cannot “ignore”. Like, we can’t even say that word because he freaks out. So, now they are working on being able to tease-the-tease. What are things they can say back to someone without actually saying something negative about the teaser. Such as, “Hey Henry, your shoes are so stupid.” Henry could say, “Yeah, whatever.” Or “Why do you care about my shoes?” Also, they are learning physical actions they can do that would suggest to the teaser that they do not care. (ie shrugging shoulders, eye roll, etc.) To practice these things, BDC thought it would be a good idea do some role-playing with him. Fantastic! I can work with him on this!

Sweet Sister Mary Francis Josephine!!!! My brain hurts. The whole idea of the point of role-play is not a concept he seems to be able to grasp. At all. Nope. It did not matter how I explained it or tried to demonstrate the exercise, he just couldn’t do it. I even had him try to tease me so I could show him some examples. He ended up so emotional he cried about it because he said he didn’t want to make fun of me. Or my hair, or my shoes, or socks or my glasses…even though I repeatedly let him know that I knew he didn’t mean it. Ok. Fine. I switched it back to him and asked him what he would say if someone told him his shoes were stupid? His response was, “Well, no one would make fun of my shoes, mom.” Alrighty. What if someone made fun of your shirt? Tears welled up in his eyes and said that someone had done that to him and now he was all emotional again because I triggered it. It didn’t matter if I tried this in first person, second person, third person or fourth person. Either I triggered him with a scenario or the scenario I gave “would never happen”. I need a drink. And I’m not talking about a drink of water.

Let’s try a different approach. Because the 20 other approaches didn’t work, the 21st would. Right? I asked Henry to give me an example of what a kid at school says to him that really bothers him. “J” from his resource class (of course) calls him “Herny”. Perfect. “Ok, Henry, so pretend I’m J. ‘Hey Herny!'” *blank stare from Henry* “Well, Henry…?”

“I’d leave the room.”

“That’s not an option.”

“But that’s what I’d do!”

“Let’s pretend that you can’t leave the room.”

“Well, I can if I ask to go to the restroom! That’s really what I do!”

*serenity now! serenity now!*

“Henry, let’s try this, you’re in your resource class, you cannot leave the room, you cannot move your chair, you cannot get up-”

“But what if I really have to go to the bathroom?”

“We’re pretending that you DON’T have to go to the bathroom but, if you did, the bathroom is broken so it’s closed. All of the bathrooms are closed.”

“But mom, that would never happen. I mean there is no way they could have school if all the bathrooms are closed all day.”

“Henry, in this pretend story the bathroom is.not.an.option.”

Good gods, give me strength!!!

This continues for 45 minutes. FORTY-FIVE minutes! If I shared with you every scenario and approach to it that I tried with him I’d end up with at least 100 pages of material. If I shared with you every response that Henry gave me, we’d have at least 500 pages of material. Ok, maybe not that much. But it sure as hell felt like that much! And so where did this get us?

The same place we started. We began at point A and ended at point A. I may have failed as a parent on this one but by gods I tried. I really, really tried. I’m just going to toss this one back on the PEERS instructor and weep while I get that drink.

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A Long Way to Cologne…

…where ridiculous resides and because I always seem to take the long way around a story:

My little dude is funny. Except, after BDC taking him shopping for new sneakers tonight, and finding that his feet are quickly reaching my size (he’s only 8!), he’s not truly” little”. Though I will probably refer to him as my “little dude” for the rest of his life. (So, Henry, you have been warned.) But I digress.

Later in the evening I walked upstairs to corral the little (see, I can’t help myself) chameleons to bed while BDC worked on getting pictures off of my phone and into my computer. Because sometimes I’m technically challenged.  Anyway, it’s a cool evening so the windows are open and our attic fan is running. When I got to our bedroom (because the kids have claimed it as their own and are watching TV in there)  I smelled something strangely odorous.  Like perhaps there was a dead animal nearby in our neighborhood, or more accurately, right outside our bedroom window.

The following conversation ensued.

ME: *scrunching my nose*  “What smells in here?”

Of course, I try to identify it and find the source.  I go over to our window to see if it’s stronger there. You know, sort of like, “Oh this milk is sour! Taste it!” Only in this case I was inflicting this upon my own olfactory senses.  Again, I digress.

As I am unable to discern where said smell is coming from, I turn back to the kids.

HENRY: “Heh, heh!”  *said devilishly*  “That must be me you smell.”

ME: “YOU smell?”   *then I realize I can’t remember the last time Henry had a bath*

HENRY: “Yeah, come smell me.”

* again with the sour milk…?  I move hesitantly toward him.*

HENRY: “Dad and I were trying some man cologne while we were at Kohl’s.”

ME: “Oh!”  *laughing*  “Did you really?”

HENRY: “Only two kinds. Smell.”  *he pulls his t-shirt away from his neck so I can get a good sniff*

ME:  “Hey, that smells pretty good!”  *said with a bit of surprise*  “That’s not what I was smelling a second ago.”

HENRY: “Ohhhh, yeahhhh!”  *nodding his head, giving me the smooth-move-finger-gun motion and an attempt at a wink*  “Dad should get two bottles of each and I should get two bottles of each for four bottles and I should wear this twice a day.”

Well, on the upside, I wouldn’t smell that dead animal smell with Henry bathing in two different types of cologne twice a day.  Although, we  probably would all end up not being able to smell anything after that, rendering any kind of scent a moot point.  (I did mention the long way around, right? Keep reading. It’s almost the end. Really.)

By this time I’m getting the kids tucked in their beds and of course, Lucy has chimed in on the conversation.

LUCY: ” Henry, you can’t wear that!”

HENRY: “I might wear it THREE times a day!  Maybe even FOUR! Ok, maybe just two. I can SO wear it, Lucy.”

LUCY: *laughing*  “Ewwww! No you can’t Henry!  You can’t even date yet.”

HENRY: *matter-of-factly*  “Well, that is true.”

ME: “You don’t have to date to wear good smells. Remember, Henry, you used to wear Mad Hatter? And you really liked that.”

HENRY: “Well, yeah.  I should probably wear man cologne more often. You know, because a man likes to smell good.”

*shaking my head. Good gods, how did I land on this planet and with these kids?!? *

So, there you have it. Because honestly I don’t know how to end this ridiculous story about an equally ridiculous conversation. But it made me so happy to see my kids laughing and being utterly serious and silly at the same time.  For me, that’s reason enough to take the long way to cologne.

A Few Wise Words About Bad Words

For whatever reason, though it’s something anxiety related I’m guessing (which deserves a much longer post), as soon as Henry puts on his jacket to wait (inside) for the morning bus he stops talking.  Every morning he asks earlier and earlier if he can put on his jacket.  This morning this is how this conversation played out.

HENRY: Can I put on my jacket now?

ME: *glancing at the clock* You’ve still got 15 minutes until the bus comes.  If you can continue talking with us when appropriate then you can put on your jacket.

HENRY: But I can’t.  It’s a ….thing.

*his new catch-all phrase for whatever he decides he is compelled to do.*

ME: No. It’s not ‘a thing’. You have words. Use them.

LUCY: But not the bad ones, Henry.

…and there you go.

They Accepted

This last part of the school year has been a bit challenging for our little dude. We are getting some notes coming home in his daily binder; “rough day”, “agitated”, “did not want to work with classmates in group”, “impatient”, “not waiting his turn”, etc. It’s the end of the school year and Henry is having a hard time holding it together some days. This is not surprising to me for a kid with an autism diagnosis. We work daily in the area of his social/emotional challenges. Always. Still.

Last week I had gotten a note and a call from the principal’s office that Henry was bothering some girls on the playground and he reached out and grabbed one of them by the shirt. This week a note came home, “arguing today”. Henry doesn’t like to get into trouble. And he really doesn’t like to talk about it when he does get into it. You can almost see how physically painful it is for him to admit he is wrong or to apologize for something. We have been working VERY hard on how to handle this in an acceptable manner. He wants to play with the other kids sometimes but he just doesn’t know how. Nor does he get those social cues when the kids don’t want to play with him or play his way. Another not-so-surprising aspect of his autism diagnosis. This is his most challenging area for sure! I was wondering if this most recent note had something to do with the playground issue from last week. I worry a great deal about what these social challenges might mean for Henry as he grows up. For how long will these challenges be oh-so-challenging for him? Will he ever learn how to navigate these waters appropriately? Will the kids ever understand and accept him for who he is?

When I questioned Henry about who he was arguing with I got the typical first response I usually get from him, “I don’t want to talk about it!” He had just come home from school which is a rough time of day anyway. Fine. Let him decompress.

In continuing with our vigilance in using everything as a possible teachable moment, later that night before bed when all was quieting down, I asked him again who he was arguing with. “Mrs. Q.” (This is his SSD resource teacher that he adores so I was beginning to worry what this was all about.)

“Why were you arguing with Mrs. Q?”

“I don’t know, Mom. Sometimes it seems like I just can’t help it.”

Fair enough. Not that this is acceptable, mind you, but at least he was thinking about it and talking about it calmly with me.

“Well,” I said, “don’t you think you should apologize to Mrs. Q for your behavior?”

“Yeah.”

“Okay, good. So when do you see her next?”

“I see her every day, Mom.” he told me in his “duh!” tone.

“Okay, so the next time you are with her you should apologize and try to work harder at not arguing with her. Alright?”

“Yeah, okay.”

I didn’t say anymore about it after that until he got home from school the next day. “Hey, dude, did you talk with Mrs. Q?”

“Yes, and I said I was sorry and I will try to be better.” (I don’t know if he actually did apologize to her but for now I am giving him the benefit of the doubt.) I figured this was the end of it at this point and we let it go.

However, this morning while the little ones were eating breakfast and I was getting clothes ready for the day, Henry came to me and said, “Mom, you know how I told you I apologized to Mrs. Q?”

Uh oh…”Yes, I remember.”

“Weeeellllllllll, I also apologized to the girls I was bothering the other day.” And with a big grin on his face he said, “And they accepted!”

ummmm….wow! Now, I don’t know if there was any adult intervention or whether he did this on his own but still, big. huge. wow.

“Oh, dude! That is really great! I am so proud of you! Great job!” But, again, as we continually try to practice and remind and practice more, I couldn’t help adding, “So now that you said you were sorry for that, you will try hard and not bother them anymore, right?” While he is getting better at saying he is sorry, he still has a hard time stopping some of the behaviors.

“Right. But can I play with them?”

“Of course! But you need to asked them if you can play with them first. And if they say no, then you need to leave them alone, okay?”

“Yeah. But then can I still wave to them and say hi?”

Oh my sweet little dude! “Yes! That would be very nice of you!”

I realize that Henry’s classmates will never really understand how hard all of this social interaction is for him. But today, I feel we are one more step closer to acceptance!

I Saw the Light

I woke up this morning at 4 o’clock and couldn’t get back to sleep. Hubby was up at 4:30 (not all that unusual for him though). We were enjoying a quiet morning (as much as one can “enjoy” anything at 4AM) drinking our tea and watching the news. Next thing we know the boy is up and crawling into our bed.

BDC: Hey, Henry, what are you doing up so early?

Henry: I saw the light.

Me: It’s not light outside.

We encourage him to not get out of bed until the light shines through his curtains.

Henry: I saw the light inside.

BDC: Your door was shut Henry and only the kitchen light is on. (A small one over our sink)

Henry: *in his “duh!” voice* Uh, the light under the door.

Oy vey!  Now Lucy is up too!  Of note: the teen who is SUPPOSED to be up now, is still sleeping with her alarm going off. Looks like this is how we’re rolling today… :-/

The Other?

My darling little chameleons were supposed to be getting dressed for school this morning.  There was much commotion and very little getting dressed. As I entered the room, without a word from me, Henry immediately jumped to his new standard response, “Lucy started it.”

“I don’t want to hear about who started it. You both need to quit messing around and get ready for school!”

“But Mom! Lucy did start it!”

“No I didn’t!” Lucy just couldn’t not defend herself. (I know, double negative. You know what I mean)

Then my mother’s own voice somehow came  from me, “I don’t care who started it!  The other needs to finish it!”

But my mother didn’t have a kid like Henry. “But Mom, we don’t know who ‘a other’ is!”

Yeah, sometimes it’s better to just walk away.

What Is Normal?

We’ve had our share of germs going around this winter break and our little dude on the spectrum did not get left out. Monday morning Henry woke up as usual, had breakfast and his meds and then promptly threw up. For the next hour or so, through tears and whining and crying, he perseverated on vomit. He’s had a fever since then but actually has done quite well once we convinced him on day #2 that he didn’t need to keep “the bucket” right next to him because we were sure he wasn’t going to throw up again.

For the last 3 days, my little dude spent his days zoned out underneath his blanket in my bed. I wasn’t feeling well myself and it was a wonderful reason to join him there. We talked, we rested (I actually napped!),  we watched TV, I read, he played video games. Interestingly, during this time we did not give him his ADHD meds. That’s how I knew he really didn’t feel well. No meds and I’ve never seen him be so still and quiet for so long! He never complained of anything except a headache and just not feeling well. His fever was running between 100 and 103. He wasn’t eating as much but more than I would expect and he was great about drinking water. Despite both of us being sick, I’ve been thinking about how much I’ve enjoyed spending some “normal” quiet time with my son.

Henry, being the kind of kid that he is, once he got over the whole “throw-up” perseveration he moved on…  such that I’ve taken his temperature about a zillion times now.  “Take my temperature mom. Am I normal?”

Normal. hmmm.

Today is day #4 with fever (and throwing up his breakfast again) so I kept him home from school and got him into see our pediatrician. We spent quite a bit of time trying to reassure Henry that he was not going to get a shot. As Dr. K was checking out his ears (and finding an ear infection!), Henry asked him, “Am I normal?”

Our doctor chuckled as he answered, “Well Henry, I’m not sure I know what normal is.” (and this is just one small reason we love our pediatrician!)

Henry, very matter-of-factly said, “You know what normal is.”

Dr. K replied, “I’m just a doctor, Henry. What is normal?”

In his incredulous tone Henry said, “You know! Normal is when you’re not sick and you are just your regular self.”

Yeah, THAT’S the definition of “normal” I’m using from now on. And I’m relieved that Henry sees himself as normal. Because he IS. It’s okay to be different and still be “normal”.

As an aside, we were quite surprised about an ear infection as Henry never once complained of ear pain or hurting on that side of his head. I’m glad I took him in. Now Henry can work on just getting back to his normal which is my favorite kind!  Just being your regular self.

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